Tuesday, July 2, 2013

Conway is having a fun summer. He loves swimming and is quite the little fish. Poor kid is allergic to most sunscreen but we have found some for sensitive skin that he does well with. He has become addicted to watching Woody Woodpecker on Netflix. It is funny to see him enjoy some of the same characters I remember from my childhood. He attended a three day golf camp earlier this summer and liked it a lot. A fellow heart mama had some youth clubs she wasn't using anymore and she gave them to him so now he's got something to take out to the driving range or pitch and putt course. This month he is going to a gymnastics camp for a couple of days and then to the highly anticipated heart camp, Camp Rhythm. He adores Baby Frances and of all the kids, he is the most loving and gives her the most attention. And she just lights up when he talks to her. The only problem is he sometimes needs reminders about being gentle and giving her a little space. He especially loves to tickle her... when she's eating or sleeping! He's been reading to her some and she just stares at him and laughs intermittently. He had a check up at the dentist and no cavities this time! He was very brave about the x-ray, too. I think it is so scary for him because it causes a flare up of PTSD from his early months in patient and all the things that were forced into his mouth.

We spent a night in Kansas City at the Great Wolf Lodge, an indoor waterpark. We figured it was ideal considering we have the new baby who shouldn't be out in the sun for long periods and for Connie who tires more easily swimming and might need to nap. He was the first one "done" swimming both days, but he did very well climbing three flights of stairs numerous times to do the water slides.

We also enjoyed a recent trip to the Magic House courtesy of the Missouri chapter of the Congenital Heart Foundation. The heart families had the whole place to ourselves! Connie loved the vacuum tubes the most.

Yesterday marked three months since his last cardiology check up and pacer interrogation. We typically have the pacemaker evaluated quarterly via phone transmission so I sent in a carelink report. The nurse practitioner called to tell me "everything looked good, but..." My heart climbed into my throat and all I could think of was, "Oh, no! We just went through surgery last summer and now this. I don't want to see him miss out on anything or have anything stand in the way of a smooth start to the school year." She said that this time there is some "noise" or impedance on his atrial lead meaning it is damaged in some way. It could be from an injury such as a fall, rough housing or repetitive movement, but it is more likely that it is just that the insulation surrounding the wire is wearing down and therefore the lead is less effective and starting to fail. In Connie's case we are lucky because he does have an underlying rhythm of his own and if this were to happen, he shouldn't just collapse. Theoretically, his pacer should switch modes and go into atrial sensing, ventricle pacing instead of pacing the atrium and both ventricles, which is what he has currently. We might notice him having a fixed heart rate around 70, causing him to be rather sluggish and tired. Dr. Bromberg said that even if the lead did completely fail, we might be able to put off replacing it surgically until he is older, as he has quite a bit of scar tissue on his heart and finding a good place on the atrium to attach a new lead would be a tough job. Conversely, placing a lead venously would compromise his vein, which, as the doctor put it, he will need for another 70-80 years.

So, we will up our vigilance just a bit while trying to carry on as normally as possible. I asked about sending reports more frequently or checking his heart rate nightly and was told to not go crazy and just keep doing what we've been doing, which is letting him live like a pretty regular kid. It is a reminder, though, that he'll never be cured and just when we get out of the routine of being overprotective it seems something comes along that thrusts us back into the reality that he has a pretty messed up heart. If you would pray that this newest discovery maintains its "let's just keep an eye on this" status, or better yet, clears up by the next transmission, we would really be grateful.

Conway's Heart Story

Conway's Heart Story

Conway David Beckemeier was born on March 3, 2007. His heart defects went undetected during pregnancy and he was diagnosed at two days of age with L-TGA, a large VSD, sub pulmonic stenosis and Ebstein’s Anomaly. Just before turning six months of age, he underwent open heart surgery to reroute the bloodflow in his heart. Called the "double switch", this procedure is the most technically challenging for pediatric cardio-thoracic surgeons to perform. The version of the double switch that Conway received on 8/28/07 was called the Rastelli-Senning with VSD closure and sub pulmonic resection. He suffered a grand mal seizure following the surgery that lasted over an hour and had several other post-op setbacks including surgical heart block, which required another operation on 9/18/07 to insert a pacemaker. Following surgery and such a long hospital stay, Conway developed an oral aversion (he would not eat) and he was 100% NG tube fed for eight months. He also lost muscle tone and required both physical and occupational therapies. In April 2008, he had a cardiac cath and attempted balloon angioplasty on his pulmonary arteries that did not work. Although his recovery was very long, he had a solid year or so of being a "normal" kid . Then in May of 2009, it was discovered that Conway was having rhythm disturbances, specifically atrial flutter. His pacemaker allowed it to go undetected for several weeks until he showed signs of heart failure and was admitted to the ICU for a week to be placed on IV heart meds and undergo cardioversion on 5/6/09. He went home and his heart function started recovering when he had another episode of flutter (6/16/09). This time, he was again hospitalized and put on IV milrinone, but he converted back to normal sinus rhythm by himself. At that time he was placed on the anti-arrhythmia drug, amiodarone. On 7/22/09 he had to be cardioverted again for yet another episode of flutter. The following week, he got worse instead of better. His cardiologist did a full work up and it was determined that his aortic, mitral and tricuspid valves were all leaking worse and were felt to be the cause of his heart failure. On 8/24/09 he had a cardiac cath and attempted ablation. The electrophysiologist was unable to induce a single arrhythmia. Then, just two days later, he went into atrial flutter on his own. He was placed back in the cath lab where he underwent mapping and a total of 17 burns were made to try to knock out his arrhythmias for good. The next day, 8/27/09, he had his second open heart surgery to repair his mitral valve called ring annuloplasty. He also had a partial Maze procedure done. His surgeries are performed at C.S. Mott Children’s Hospital at the University of Michigan (Ann Arbor). This time he was discharged just six days later! His Left Ventricular function improved drastically. In December 2010 we noticed he began getting more winded during physical activity. A January 2011 cath showed that he is outgrowing his RV-PA gortex conduit, but he was not symptomatic enough to warrant intervention.In April 2012 Conway’s fatigue increased and an echo at the end of May revealed that the ratio between the right and left sided pressures has gotten too high and it is time to replace the homograft that was placed when he was five months old.He had a cardiac cath on 5/25/12 which confirmed the echo findings. He had surgery on 8/8/12 to replace his pulmonary valve and RV-PA conduit, add an additional pacing wire to his left ventricle, and change his generator to a bi-ventricular model which is shown to preserve function and help the heart muscle pump more efficiently/effectively.